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C5 Palsy

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Old 06-10-2016, 02:10 PM   #21
Jastek
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Week 32 - I have seen some improvement in range of motion and strength. I can now raise my arm straight out in front of me (90 degrees). Biceps are still not coming back, but the nerves there are the furthest distance from the central cord, so it will take longer.

I had an EMG done and the doctor tells me that there is evidence of nerve growth. He also told me that he would have expected more regrowth than I have, but that I am only 7 months out and it could take another 6 - 8 months for me to reach maximum regrowth. He said that he has seen some patients drag along like this and suddenly have very quick growth. He has also seen some patients take a full 2 years to see maximum regrowth. Only time will tell.....I'm not giving up the hope that I will get back at least 80% function. I have no illusion that I will be 100%.

I have started working on a universal machine at home to strengthen the muscles around my deltoids and biceps (triceps, traps, romboids, pecs, etc.) in hopes that this will help regain overall strength. I met with a rehab specialist who said that this approach is much better than focusing only on deltoids and biceps. That should be common sense, but I never thought of it. I am still using the E-Stim 2 times per day (really getting sick of using that).

The pain in my arms is still there. Doctors keep telling me that it should go away at some point. I just with that time would come...
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Old 07-18-2016, 09:42 AM   #22
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Week 37 - Range of motion in deltoids has improved. I can lift my arm in front of my body about 95 degrees (slightly more than straight out). My bicep has improved a little. I can curl about 1/2 pound once my arm is bent more than 20%. I still have no strength if my arm is straight down (I still don't understand that).

I had my follow up with neuro and he is telling me that the EMG shows injury at C5, C6, C7, and C8. He thinks this is Central Cord Syndrome (CCS), not C5 palsy. With this many levels of injury, he feels that it has to be CCS. My other doctor looked at the EMG and still says this is C5 palsy, not CCS. At this point, I don't care what it is, the treatment and recovery are about the same for me.

The pain is still there and my use of Gabapentin are the same. Neuro says that it may take a long time for it to go away, if at all. Yes, he says that the pain may never go away.

As long as I keep seeing improvement, I am not giving up hope that the pain and weakness will get back to at least 75%.
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Old 08-15-2016, 09:58 AM   #23
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week 42 - As far as deltoids go, it appears as if I've reached the point where nerve regrowth has maxed out. I can lift my arm straight out in front of me to about 130 degrees (3/4 of the way up). My deltoid strength is only at about 40% of what it was. Hopefully, as I continue to strength train the muscle, it will get stronger (it is a slow haul).

Re-innervation of the biceps has started to increase. I still can't quite bend my arm from a straight position, but I am close. Strength is still almost non-existent. Curling a 1 pound weight is about all I can do (after it is bent about 30 degrees), but at least I can move it against gravity now. I still cannot supinate my hand (turn it palm-up), which makes eating with that hand difficult.

Pain still has not gotten any better. Doctor is puzzled by this, since the pain is usually the first thing to get better. Seems to think I have some amount of central cord damage that is causing radiculopathy or myelopathy. If that is the case, I may have to deal with the pain indefinitely........
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Old 10-28-2016, 02:32 PM   #24
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Well, today is the 1 year anniversary of my surgery. The surgery that changed my life completely (for the worse). All along I have been told that recovery will take 1 year and after that, I will have very little (if any) improvement. It looks like that is going to be true (maybe not, but probably so).

At this point, my left arm is at about 90% of what it was before surgery and I have full range of motion. Strength is not 100% but for the most part I can't tell any difference unless I am lifting weights.

My right arm, however, is a different story. I almost have full range of motion, but strength is almost non-existent. I can only curl about 3 pounds and I can only lift about 2 pounds straight out in front of my chest.

The muscles in my shoulder have bulked up to the point where the bones are no longer visible, but my right bicep muscle is still so small that you cannot see any bulk at all.

From a pain standpoint, there has been no change at all. I still have the same pain levels now that I had right after surgery. I am taking Gabapentin 3 times a day just to make the pain bearable. My doctors say that this is not usual. Usually the pain stops as the nerves grow back.

My doctors are still saying that, in addition to the C5 palsy, I also have a spinal cord injury (central cord syndrome). During the surgery, the nerve roots got stretched, but the spinal cord also got injured. The central cord syndrome is probably why the pain has not gone away and why my right arm has not recovered as well as the left. One of the doctors told me that if I didn't have the cord injury, I would have had complete recovery in both arms by now.

So, as for my C5 Palsy, it looks like this is the end of my story. It looks like my recovery may have maxed out. For my spinal cord injury, I am told that small improvements can happen as far out as 10 years. Let's hope that is the case and I still get some strength back, or at least see less pain.

For those of you reading this because you have C5 Palsy, I can tell you that full recovery IS possible if you work at it. Do not expect full recovery if you just sit around. Your occupational/physical therapist will give you exercises to do. DO THEM 3 TIMES A DAY EVERY DAY!!!!! You will get out of it what you put into it. Also, ask your doctor to give you a prescription for an FES or electronic nerve stimulator. Do this right away. The sooner you start using it, the better. Use it 3 times a day and preferably while you are doing your exercises. This stimulator not only helps the nerves grow back, but it also helps to prevent the muscles from atrophying (withering away).

This is YOUR recovery, so you need to make it all happen. Your doctor and therapist probably have very little experience , if any, with C5 Palsy, so do your homework and don't let anyone tell you that recovery is not possible. It takes time (1 year or more in some cases). Don't get discouraged and keep fighting it. If you have questions, I am happy to help if I can (just PM me).

If I see any further improvements, or if I run across any info that is relevant, I will still keep this thread going. If you have C5 Palsy, post your experience on this thread. Make this a place where others can benefit from our experiences. C5 Palsy is a horrible thing to go through and information is hard to find.
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Old 12-13-2016, 08:38 AM   #25
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Not sure if I'm posting my comment correctly on here...Im on my 6th month of c'5 palsy, neither my doc, surgeon, Pt ladies had ever dealt, seen or heard of c-5 palsy, a friend of my daughters had it happen to him, he said it took 21mo to recover and not 100%, I have to get the ball rolling for disability because it takes such a long time...I regret having this surgery, its been a life changing one...In my line of work, there is no light duty positions, Ive had the horrible buzzing in my left arm, is worse while im sleeping, it wakes me up, I asked the surgeon and he had no answer...thanks for the updates, your right, there isnt much info out there...the surgeon never told me this was a possibility....it has been very frustrating, the depression was the worst, I am not one to ask for help and here I couldn't get a shirt on or off, button my pants or even comb my hair, you get creative with your left arm, Im rt handed also...my left arm has been hurting very bad, not sure why this has started happen now...thinking maybe
Over doing it since I can't use my right arm....thanks for the updates...very helpful
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End of week 18. A little improvement in shoulder (deltoid) strength. I can now reach the center of the steering wheel on my car. About 2 inches higher than I could reach 3 weeks ago. No improvement in bicep strength, but I can feel some movement of the muscle when I try to flex it (its alive at least). The nerve pain in my arms is still pretty bad, mostly later in the day. I'm being told that this pain will likely persist until the nerves have regenerated. Gabapentin relieves it most of the time, but there are days that I have to take oxycodone to get any relief.

I have also been dealing with this new problem that causes buzzing in my arms, legs and shoulders when I tilt my head forward. The surgeon says its called L`Hermittes sign. It is usually seen in MS patients when the disease attacks the myelin that surrounds the spinal cord. This causes mixed signals to the brain. In my case, the surgeon says that it is caused by my spinal cord touching (rubbing against) one of the remaining rear spinal bones (a result of the posterior decompression surgery). Apparently, this is something that I either have to live with, or have another surgery to remove more spinal bone. I think I'll live with it. There is also a chance that it will go away on its own after my nervous system settles down.
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Old 12-13-2016, 08:46 AM   #26
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Buzzing sound or feeling?
I have the pins and needle feeling in my left arm...the entire arm, was worse when I laid down, it would wake me up...was suppose to get back sugery, but I knew I would not be able to get that enourmous back brace on by myself daily for 3mo....and I am afraid to go under the knife again....something is making have this feeling of not trusting the same surgeon again....
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Thanks for the reassurance that I'm not going bonkers. The buzzing has stopped, thankfully. Doctor thinks it was just caused by the nerve roots getting used to their new position after the decompression surgery.
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Old 01-24-2017, 05:09 PM   #27
Jastek
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Ohio49 - The buzzing in your arm may be L'hermittes sign, but if you only have C5 palsy, it is probably something else. When your nerves start to grow back, they do some very strange things (like buzzing and twitching). Hopefully, that is what's causing your buzzing.

Have you had an EMG done by a neurologist lately? An EMG can determine if the nerves are regenerating. This growth will show up as something called "growth potentials". The neuro will be able to tell if the amount of regrowth could be the cause of the buzzing. They should also do a MRI to see if there are other issues like L'hermittes.

Are you using a nerve stimulator? It can also help with things like pain, buzzing and twitching.
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Old 01-24-2017, 05:12 PM   #28
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By the way, get a second opinion before having any surgery, especially a 2nd surgery.
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Old 02-08-2017, 09:17 PM   #29
Bloosman21
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Hi all

I wanted to share my experience thus far as information on C5 palsy seems scarce and what IS out there contain various prognosis and outcomes.
I've read many stories on this horrible dilema, some uplifting and some make me feel quite fortunate I'm at where I am.

I had a posterior laminectomy at C5-C6 Oct. 2016 to remedy extreme spinal cord compression which was stealing my leg function as well as effecting both arms in very negative ways(numbness, coordination, strength)...
I would lose touch with my feet as if they were'nt even there.
Could move them if I thought about it but it was as they if they didn't exist, especially when driving...SCARY!

Any ways, after surgery that night in bed and unbelievable pain, I experienced just ripping, burning, unbearable type pain across my left shoulder.
Long story short, next day my left deltoids were completely dead as was a portion of my bicep and also the radial muscle that runs from your bicep across the top of the forearm and into the wrist...

My neurosurgeon sent me immediately for another MRI to be sure there were no problems with the fusion or hardware shift (rods and screws) and the MRI looked GREAT, spinal cord completely decompressed was the good news, most likely severe tethering of the nerve root, bad news and causing what he explained to me as being something called C5 Palsy...

Without getting too windy here I just want to quickly sum up how things progressed and hopefully this will lift some you out theres spirits.

MONTH 1: Pure hell, just the horrible pain one would expect from a posterior approach to the spine, a place my NS said God did not want us to be .
Around day 30, pain was starting to get less with plenty of Norco but the left arm and deltoids were useless mostly. Could not hold a dinner plate, a pot of coffee. Couldnt even throw the blankets off my body without the other arm. Had to get creative to learn to pull up my pants. Putting a tee shirt on was a joke. I feel for some of you out there. I've read your stories, I at least had a fairly healthy right arm with all the normal pains, numbness, tingle of course, but functional.
C5 palsy is not just physically debilitating, but emotionally devastating.
I was soo depressed...
I'm a 55 year old in good shape, 180lb, 5-10, and work on an underground crew which demands strength and agility...I felt like this was all gone and I was doomed.

MONTH 2: Pain was still present and getting out of bed was a little easier.
BIZZARO! So I was sitting on the couch watching a movie with my girlfriend and BTW my savior as she has helped me so much!...and out of the blue I got this painful JOLT shoot across my left shoulder. Much like the first night after surgery. Something felt different though, I looked at my girl and said "Babe, something weird just happened"...So I stood up and started moving things around a little to see if there were any changes. Just like they say, there will be some spontaneous resolve at times. It dawned on me that my forward deltoid was firing. I could lift my arm so much easier, not without lots of drag mind you as the rear deltoid was still dead, but I realized later that night as well as in the morning that putting a tee shirt on and off became almost effortless.
I want t mention that at this point I started a physical therapy program (very light) just to keep the range of motion going...VERY IMPORTANT
I got a little cocky even at the end of month 2 and thought I could chop a little firewood as it was December now...MISTAKE...I was so worried that I may have fouled up my fusion due to pain and what not...
IMPORTANT: Take it all real easy, lots of rest, physical therapy and patience.
PS...a little Norco and an occasional beer didn't hurt either!

MONTH 3: So January 2017 came...Happy New Year!
Still doing physical therapy, BTW this was all done at home after an initial visit to a PT guy and had some direction.
I've been pushing some light weights as my NS has given me the go ahead to push 30 lbs as my last xray looked good regarding fusion.
My left arm is still very weak and deltoid in the rear is not firing.
I must say though, that I've been experiencing alot of nerve burners on my left shoulder deltoid area and alot of muscle spasm at the failing bicep and forearm...I'm convinced that this is nerve regeneration going on as its a very slow process and even slower depending on how bad your initial nerve damage may of been during surgery. Why do I say this?

Today is Feb. 2017...Over the last week I have had the following improvement
Three weeks ago I could only curl a 1lb weight with my left arm due to the forearm and bicep failure...today, for the first time I curled a 5lb bar, 3 sets, 10 reps. I look at my forearm and can actually SEE the muscle flexing where there were was nothing a week ago. Its firing, but weak. More PT!!!
Its like they say, spontaneous resolve can happen...
Today during my PT session, I could feel ease in lifting with the rear deltoid;
I think its slowly coming back now as well...my NS told me that MOST C5 palsy cases will resolve within 3-6 months...
All I can say to everyone is stay positive, do any physical therapy you can, and believe that will get better because it can...

I'm going to keep working on strength now and will go back to work April 4th on a months light duty to start...I'll stay in touch...any feedback, questions from you all experiencing this what I call, "streak of bad luck" will be answered if you'd like....Take care all for now...Tim
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Old 03-23-2017, 02:06 PM   #30
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Tim,

It's great to hear you are getting such good results in your recovery. Your case seems to be following the 6 month recovery timeline. From what you have told us, it looks like you are headed to a full recovery.

It's good to see more posts here, so others can see that full recovery is possible. Keep up the fight! Good luck.
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